State seeks delay to go over changes to program for medically fragile kids

Parents afraid children will lose in-home services, want more time to discuss plan with lawmakers

July 19, 2012|By Deborah L. Shelton, Chicago Tribune reporter

Julie Hamos, head of the state Department of Healthcare and Family Services, was asked by a group of parents to seek more time from a federal Medicaid agency to go over changes to a program that funds in-home nursing care in Illinois for medically fragile and technology-dependent children. (Heather Charles, Chicago Tribune)

Illinois officials have asked the federal Centers for Medicare & Medicaid Services for a 90-day deadline extension to work out changes to a program that funds in-home nursing care for medically fragile and technology-dependent children.

Parents whose children receive care in their homes under a Medicaid waiver program had asked Julie Hamos, head of the state Department of Healthcare and Family Services, to seek an extension on the state's deadline to apply for renewal of the program.

The parents feared that planned changes to the program — new income restrictions and an altered definition of guaranteed care — would force the children out of their homes. They also complained that many details have not been worked out, including a transition plan for children who no longer would qualify.

The changes were slated to go into effect Sept. 1.

Speaking on behalf of some parents, Margaret Storey said the delay was a relief.

"This gives us some breathing room and a chance to work with legislators to address families' anxieties and concerns about changes to this program," she said. "We still have many questions about the income cap, the level of care, copays and the transition plan, but this gives us much more time."

Michael Goldberg, whose 13-month-old son Quincy would not qualify for the program under the income restrictions, said the deadline extension "feels like a stay of execution, not a solution" and criticized Hamos for declining to consider alternative options.

Two groups of fragile Illinois children receive in-home skilled nursing services funded by Medicaid dollars. About 500 are Medicaid recipients, and about 550 are eligible under the waiver program.

Most of the children have tracheotomies and rely on ventilators to breathe or need feeding tubes or other medical intervention to survive. Private insurance typically pays for their equipment, medication and other costs but not for private-duty nursing, which costs an average of $11,000 to $16,000 monthly. Without home- and community-based services, the children would require institutional care in a hospital or nursing facility.

Officials from the Centers for Medicare & Medicaid Services on July 11 asked state officials to request a deadline extension to allow federal officials time to review the changes. The state submitted a formal request Monday.

In its letter, state Medicaid Director Theresa Eagleson cited the request by the regional office of the Centers for Medicare & Medicaid Services and "concerns expressed by families over the tight time frame for transition to a restructured program."

A spokeswoman for the federal agency said the it has received the state's request. "A decision, regarding the extension, should be issued in the coming weeks," she said in a statement.

The program is being restructured to help close the state's budget holes and was part of Medicaid legislation passed by the General Assembly in May and later signed by Gov. Pat Quinn.

A group of parents filed a class-action lawsuit July 9 seeking to halt the changes, arguing that the plan violates the Americans with Disabilities Act and other federal laws.

Bob Farley, an attorney for the parents, said he viewed the request for a deadline extension as a good development "because no medically fragile child will have their Medicaid benefits eliminated or reduced during this review process by the federal government."